Monthly Archives: June 2015

Isaiah’s Promise

BabyinhandsFor the five months of pregnancy that I knew my unborn baby would die I was unable to sleep at night. I opened a new Google page and put in the words “trisomy 18.” I tried different combinations of “infant death,” “genetic defects,” “pregnancy without a baby” and I kept coming up empty. I’m not sure what I was looking for, but perhaps I wanted a literary essay grappling with the reality of a pregnancy that would end in death. Perhaps I was looking for some discussion of shamanism or another spirituality to give me some understand of my place on the planet. I remember those first days, sitting on the warming Earth with my hands on the ground. My son was toddling around the yard and I heard the words “Not all beings live long” in my heart center. I was in shock and I was searching for some support about living in the reality of my situation.

After reading through the medical information about trisomy 18, I found some writings that were very Protestant and difficult for me. I read a book by a Christian woman who could not believe that her baby died when she had asked Jesus for a miracle. There were a few blog posts and articles that said that if you have faith in Jesus, then you demand your miracle and you fight the diagnosis. I was perplexed. I did not grow up in a Christian faith that makes demands on God, though perhaps we have all done this at some point. I understood the Orthodox Faith to be the faith of Mary, the Mother of God, who said “Be it done to me according to Thy will.” The faith of St. Seraphim of Sarov and St. Xenia, of St. Mary of Egypt, fool for Christ, St. Anthimos of Chios and St. Nectarios, the humble bishop of Aegina. Again and again our saints and teachers tell us we have to submit to the reality of our lives, to God’s will, fate or karma. Whatever language we use, we are walking the path of life and challenges appear out of nowhere. Our American culture does not offer much support for those of us going through life-threatening and grief-filled situations. I could not change Mary Rose’s “diagnosis” but I could honor her life and her death.

Several weeks after finding out about my unborn child’s condition I found the book For the Love of Angela by Nancy Mayer-Whittington. I read it at night when I could not sleep. I was so relieved to have found a book that resonated with my situation. Mayer-Whittington, who is Catholic, had a few miscarriages between her eldest daughter and her pregnancy with Angela, who died of trisomy 18 shortly after birth. The book had short chapters which were perfect for someone in my state of mind. Mayer-Whittington writes of her acceptance of her daughter’s condition, her path and grief, and her work to use her circumstances for some good. In one of the poignant moments in her book she writes about hearing a song on the radio that had been played at her wedding and embracing her pregnant body to dance with her unborn child. Meyer-Whittington knew that she would not have the chance to sway and dance with her child in her arms so she enjoyed this precious moment with Angela. I cried and finished the book quickly. Then I wrote an email to Nancy.

I read in the book that she and another woman whose baby had died, Cubby LaHood, founded a non-profit organization to support parents who choose to continue pregnancies after a fatal or life-threatening diagnosis. In my grief and shock it didn’t occur to me that I could ask for help from Isaiah’s Promise. I wrote to thank the writer for her book and to let her know how much she was comforting me. Within a few days I had an email from Cubby, who mentored me throughout the pregnancy and who remains a dear friend. Cubby asked for my address and within two days I had beautiful gifts coming to my door. Isaiah’s Promise sent presents for my unborn baby when most people would not consider such a thing. Their volunteers made beautiful blankets, including a pink and white blanket with Mary Rose’s name stitched on it, a baptismal gown and tiny booties for a premature baby, a baptismal kit, the book Letters to John Paul: A Mother Discovers God’s Love in her Suffering Child by Elena Kilner, a prayer shawl, and other thoughtful and touching gifts that surrounded our few moments with Mary Rose. Cubby, whose newborn son, Francis, died many years ago, has lived her life in service to others. I did not know that she was battling cancer as she wrote to me. She didn’t want to add any stress to our difficult pregnancies by telling us of her own struggles.

Isaiah’s Promise cites the scripture from Isaiah 49:15 “See, I will not forget you. I have carved you on the palm of my hand.” They have a beautiful documentary on their website interviewing a few of their families. They recently published an Isaiah’s Promise Tribute Book honoring a few of the babies in their 25-year history. I am so honored that Mary Rose is featured in those holy pages among so many other intercessors.

Isaiah’s Promise might be an anomaly in that most of us deny and hide from the reality of babies with genetic defects and their subsequent deaths. However, we can all become more sensitive to those with illnesses and fragilities, not just our babies who are challenged from the womb, but our elderly and our bereaved. Nancy and Cubby met decades ago and decided that together they would support others going through the challenges of similar pregnancies. Instead of hiding from the presence of other children who would no doubt remind them of their own deceased babies, they stepped forward and embraced dozens of children who were deformed, defected, and perfectly beautiful. I count Nancy and Cubby as my life teachers. I too am writing to comfort even a handful of people. Instead of putting Mary Rose behind me, as some would want me to do, I am taking her with me on my path, and I will pause along the way to offer love and comfort to the mothers of our Graces and our Ryders. There is no greater love than this… Loving our children unconditionally is easy when we have a community to uphold us in prayer, love and action.

The Grief of Siblings

AngelFeathers1024x683My son says to me, “Mommy, I want to die. I want to go to heaven to see my sister, Mary Rose. I miss my sister.” My son was almost two and a half when he embraced and kissed his newborn sister. Fr. John took Mary Rose to the church when my son was asleep, that fateful Friday that she was born, and when my son woke up the next morning he asked me “Where is my sister? Where is Mary Rose?” We talk about the grief of mothers and fathers, but the siblings have difficult grief to bear without the understanding that adults have about death. If we have trouble processing the death of a loved one, what is it like for our little ones who are grappling with the reality of this big life lesson in their young lives?

I’ve only been to the cemetery once since Mary Rose’s funeral on August 9th. We did not bring our son to the funeral, though he was introduced to his sister and encouraged to be with her in the short time that we were together as a family on the earth plane. Before we went to the cemetery to see her stone in February, I explained to my son that we have a soul and a body. I told him an angel takes the soul up to heaven and that Mary Rose was given a new body with no owies, that heaven is a place where everyone is together with God, but it gets confusing because I also tell him that his sister is here with us, and that God is everywhere. When we went to the cemetery on a Sunday morning, my son was excited when he got out of the car. He looked around frowning at the stone markers and asked, “Where is my sister?” Apparently my discussion of laying the body to rest didn’t do much for my then three-year-old son.

I know that many people bring small gifts to their family members’ gravesites and go often, speaking to their loved ones there, feeling comforted. The cemetery is an important part of many people’s healing. Mary Potter Kenyon writes beautifully about her visits to her husband’s grave in her book Refined by Fire: A Journey of Grief and Grace. Her husband died unexpectedly. I wonder if it is different when people expect a loved one to die, as it seems to be with pumping mother’s milk. Perhaps for those of us who know that death is coming, the cemetery is not so critical in our walk through the grief because we start our grieving with the diagnosis. We brought crystal angels and stones to the cemetery and placed them on Mary Rose’s stone, but I left feeling bereft.

After Mary Rose’s death I started noticing feathers all over our yard. This has been my way, to pay attention to nature and to look for gifts and signs. I gathered those feathers believing that Mary Rose gave them to me. They now hang above my desk surrounding an angel sculpture. It is important to follow our individual grief. If grief leads you to the cemetery, then go and be there. If grief leads you somewhere else then that is okay too. Whatever feels right is the path to process the pain and grief of our loved ones’ deaths. We can choose to suppress our sorrow but it stays in our bodies and hearts until it can’t be contained any more. Instead we can sit with grief, breathing into the center of our cracked hearts to begin our healing process. I have chosen to spend this last year grieving my daughter’s death knowing that this is the healthiest path for me and my family. It hurts. I want to run away, but I breathe and stay in my life, because despite my daughter’s death, I love my life.

“How can I go to heaven?” my son asks again. “Can I take a plane? Can I take a train?” I remind him of the angel that is our transportation to heaven and he stares at me trying to figure this out. “I don’t want to stay on earth any more,” he says, “I want to be with my sister.”

There are several children’s books on death and I have read a few, though I hesitate to show them to my son. Many of these books talk about saying goodbye. They focus on the finality of death. For those of us who don’t believe that the relationship with our loved one ends after death, how can we explain the transition of the soul from one life to the next? I continue to love my aunt, Matina; my grandmother, Despina; my daughter, Mary Rose. I feel them. They come to me in my dreams. I hear them whispering through the breeze. There is no end to my relationship with them, and our love continues to grow. I know that for those who don’t believe in the afterlife this might seem strange, but I never thought that this was it. Each life touches one person and then another and another and continues after death through us and through the expansive life of the soul which never ends.

I recently enrolled my son in a grief program called The Healing Chickadee offered by founder, Terry Murphy, through wordbirddelivers.com. (See Resources.) Ms. Murphy’s brother died when she was a little girl and she did not have the language or tools to explore her grief and process her great sadness. My son will receive a bird each month for a year with a story that deals with grief. We received DeeDee first, the chickadee whose grandmother died. She comes with a cardboard bird house to paint and decorate. We love DeeDee. After we received her my son asked “Mommy are you too old? Are you old enough to die?” I tell him that most people die when they are old and I remind him how old his great-grandmother is. I tell him that only God knows when people will die. I am honest because I want him to know the truth that life is messy and chaotic and that tragedy strikes each and every family. We might want to avoid sadness and death but they both creep into our lives eventually.

For the siblings who have their own trauma it is important to talk about the emotions that come up when the children are ready to discuss them. My son seems very shaken when he sees newborns. After a pediatrician’s visit where he saw a newborn in the waiting room my son says “Our Mary Rose didn’t move. Our Mary Rose didn’t cry.” The first time he saw a newborn move her tiny arms, he was startled. His sister could not move from her weak muscles, and then she was still, wrapped in a pink blanket that said Mary Rose.

Sometimes my son says “Mommy I want a baby in our house. Two babies.” Other times it is, “Mommy all your babies will die. If God gives us another baby it will die too.” This is what my son knows. He knows that life is fragile and that babies sometimes die. I imagine that if we have another pregnancy that this will bring up trauma and memories of me weeping for months, stuck in back pain, not wanting to move forward or face what labor would bring. I also know that I will hold his hand and snuggle and tell him that God is in charge, and that every life does what it is supposed to do. For a minute or an hour or several decades, each life has a purpose. Each life will pass from this body and continue on its journey that takes her both far away and very near to our hearts.

In the Orthodox Christian liturgy we pray for the living and the dead at each service. Somewhere in the hymns and prayers and Chalice we find that we are all connected and united in Christ. Christ means Light. If we make the choice, we too can embody Light. The holy doors to the altar of the temple or church stand between heaven and earth in the iconography depicted. On the one side we see Mary, the Theotokos, God-bearer, holding her son, and on the other side, Christ, the Pantocrator, who will come again according to our traditions and scriptures. If we are honest we live between heaven and earth, between the ancestors and the future generations. The Native Americans believe that a laboring woman stands between death and life as the veils thin to allow each soul to enter from one world into this one. I too am a door between heaven and earth. I walk holding my sweet son’s hand, and feel Mary Rose reaching out to us.

This life is a threshold and a portal into the deep waters of our souls. When people ask me if Gabriel is my only child, he too looks startled. I want to scream “Of course not,” as my body is clearly still loose from carrying and birthing my daughter. My sister offered that it would be easier to say yes, and not discuss Mary Rose with strangers or acquaintances, but to deny her existence is to deny part of my path. Sometimes I wonder if our family will always grieve Mary Rose. I know that there are moments of such sharp pain of missing her, that I will miss her my entire life. I am grateful for the opportunity to nurture her in my body and to be the opening into which she could come. Birth work is sacred work. Our grief is also sacred, especially the innocent grieving of our young children. Their eyes are open to realms that many do not experience until they are adults, and we, their parents, can honor their path as they love and miss their siblings, as we walk together, holding hands, taking another step forward on this meandering road.

Another Child?

 

IMG_0632I hang up my Skype call to my therapist and see that NPR has a story on new studies that link higher autism rates to older parents, specifically mothers over 40 and fathers over 50. They do not mention the rates for 48-year old fathers. As my son says, “I turned sad.” I promised myself a year to work through my grief before I decide yes or no to another pregnancy, and that year is coming to a close. I am almost 43 years old. My first two pregnancies were unplanned, but now I am in a different position. I imagine a healthy baby in our house so that my tender son can grow up with a living sibling. But I now know many things that I wish I could unknow. It isn’t just the three trisomies that concern me, it is many other defects and illnesses that I had never heard of before. And of course there are the usual worries such as miscarriage, SIDS and increasing rates of many chronic childhood disorders, including learning disabilities, diabetes and cancers.

Most grief books about baby death discuss a subsequent pregnancy. Some people get pregnant right away thinking that this will take away the pain of their previous pregnancy, though it does not. One baby cannot erase the pain of missing another baby who has died. Others choose never to have another pregnancy, never to take a chance on another baby having the same disorder or defects. Some parents decide to adopt, and several people have suggested that to me. Adoption takes advocacy, and I’m burnt out after taking care of my terminally ill aunt and fighting to give my daughter a quiet homebirth. At 43 my husband and I have a 95% chance of having a child without the three trisomies. I am a worrier by nature. My parents each passed on a worry gene and the outcome is one very neurotic daughter. After a pregnancy that ends in death, what comes next?

My friend Yana has a daughter who needs a liver transplant. Her daughter is two years old now and will probably have the surgery in a couple of years. Yana and her husband each carry the gene for Crigler-Najjar Syndrome. Each of their pregnancies brings a 25% chance of this disorder. They asked themselves if they could handle another child with this disease and they decided that they could. They just birthed a healthy baby girl. My friend, Terry, on the other hand gave birth to two daughters with cystic fibrosis and they both passed away. She also had a 25% chance of this disorder with each pregnancy. She does not regret her children, nor when her doctor suggested an abortion during her second pregnancy did she ever wish that she had made a different choice. Mary Rose’s trisomy 18 was a random defect. The rates go up slightly as women get older. There was about a 2% chance of having a child with trisomy 18 at 42 years old.

In my dreams my grandmother, Despinaki, speaks to me. She says “You’re not a young girl of 25. I have a baby to send you. The hour is good.” I see her with Mary Rose and they are smiling and beaming their rays of Light. In meditation I connect to the spirit of a child that I have felt around me for decades. She says, “You still haven’t learned to trust God completely.”

Sometimes I repeat Byron Katie’s words “I want whatever God wants” and mean them with all of my being. There are moments when I know that no matter what I choose or what I do I will be alright. After Mary Rose’s death I told my therapist how scared I was that my son would die too. We looked at that fear, and I realized that if that happened somehow I could survive that too. We humans are survivors. Look in the cracks of the sidewalk and see how life seeds itself and grows up toward the sun.

I am thinking of Stanley Kunitz’s poem “Touch Me” where he writes about his garden and crickets and asks

What makes the engine go?
Desire, desire, desire
The longing for the dance
stirs in the buried life.

What are my desires? Do I desire another pregnancy to heal this one? To end my childbearing years on a different note? And then I remember Jean Valentine’s poem “The River at Wolf” where she reminds me

Blessed are they who remember
that what they now have they once longed for.

What do I long for now? A healthy baby in my arms or any baby? Could I handle another Mary Rose? A child with another illness, severe or not? Would I ever regret the outcomes of another pregnancy? It is almost time to answer these questions. Fertility rates drop dramatically between 41 and 43 years old. I do not know what the next few months or years will bring, but I know that I agree with Byron Katie about something else. She says that life breathes us, that if we don’t have the answer yet then it isn’t time to make a decision. Katie says that when the decision has to be made it makes itself. So I am waiting just a little bit longer to see what that decision might be.

Krista Tippett interviewed Jean Vanier, founder of L’Arche, on her radio program On Being. I listened to the interview this week. He talks about the communities that he founded for people with disabilities and about the “equilibrium of the heart.” He finds that when you open your heart to be present to people considered ugly and broken by others you find peace. There among the dark places of our illnesses we find peace and therefore God. Vanier tells a story about St. Francis and how he hated lepers. St. Francis said “One day the Lord brought me to the lepers and when I left there was a new gentleness in my body and in my spirit. From there I really left to serve the Lord.” What is it inside of us that turns away from people with disabilities and illnesses? Even St. Francis had trouble with the lepers of his time. When my aunt was paralyzed in her hospital bed, swollen from steroids, friends and relatives said “I can’t look at her like that,” and some stopped visiting her. I looked at her and touched her. I brought my son to her as an offering and he kissed her and played on her hospital bed amidst the body that could no longer do what she wished it to do.

And my daughter, my six pound baby, who could only open one eye, whose head was too big, chin too small, feet too long, heart broken, whose muscles had no tone at all, whose limbs splayed and whose jaw drooped open, I held that child and loved her in the murky waters of her birth. I was still. I told her she could go to her heavenly place, that we would be okay. My husband, son, mother, midwives, doula and two friends were in that space of a failing newborn’s body and we were all changed. How could I not find God holding my daughter with severe retardation and defects across her whole body? How could I not find peace? For those who opened their hearts to Mary Rose, they saw a glimmer of God and holiness. For those who chose to ignore her existence, they were not open to the “equilibrium of the heart.” By closing our eyes and our hearts to the darker parts of humanity we are denying ourselves the love that fills our broken and cracked hearts. It feels like the more that we are broken and cracked the greater our capacity to be present in the moment and to love unconditionally.

My dear homeopath is nervous about pregnancies in women over 40. I don’t ask her why, but I imagine that she has formed her belief over her research studies and her private practice. The high risk OB/GYN I saw during my pregnancy with Mary Rose smiled and said “You should definitely try again. Most of my patients are infertile.” She highly doubted that another pregnancy with such complications would be our lot. My midwife, Anni, thinks getting pregnant again is a great idea, the sooner the better. She thinks that the data are distorted as fewer women give birth in their 40s and the numbers are off. Anni has also sent me some recent studies that indicate that women in their 40s have healthier outcomes because they take better care of themselves than younger mothers.

I imagine a room of 100 babies, my 100%. I walk in and look around. I want what God wants. Five of these babies have trisomies. Three of them will die as babies. The first few times I imagine this room of babies I am scared. Which are the five that I don’t want? But then my heart softens and I realize that I could love all of the babies. I don’t know if I will become pregnant again, or if I get to keep a child nor do I know which one might be birthed. But I walk forward with trust in my heart. Whatever condition a baby is in, I can love her. I won’t live by data and statistics alone. It is the heart, the heart that carries me forward, closer to my Light.

 

The untitled artwork pictured above is by Lori Thomas Abbott .

Why Do People Compare Grief?

IMG_0550I pull into my friend’s driveway at the end of the road and feel like I am visiting a magical place. I am thinking of fairies and woodland creatures as I get out of the car taking in the shady property surrounded by pine trees and gardens with echinacea. I read about this house in Terry Jones-Brady’s book A Mosaic Heart: Reshaping the Shards of a Shattered Life. Terry writes about her two daughters’ deaths from cystic fibrosis and her first husband’s suicide five years later. She is outside waiting and asks me “How long has it been?” I pause surprised that it is June 8th, surprised that it is ten months since I held my baby girl in my arms.

Terry and I have been talking about how people compare grief. The first time I met Terry in the fall I muttered something about how my grief can’t be compared to hers. She looked me in the eyes, holding her blue mug of tea and said “Grief is grief. You can’t compare.” Right then in the wake of my new journey as a grieving mother, I saw my own conditioning. As a young child I was compared to other children and to my sister. We are taught to measure our achievements by looking at how others have done. We compare our paychecks, houses, cars, looks, health and relationships to those of our relatives, coworkers and Facebook friends and we feel inadequate in these measurements. We never know what goes on in someone else’s house or heart when the lights go out, when we aren’t there. Here in the club of parents whose children have died, how does it serve us to compare our grief? Who wins if one of us has more pain?

I think back to the many grant proposals I wrote and how we developed assessment tools to measure success. But can we measure or quantify grief? People try to do so. My mother tells me that my grief over burying my newborn, Mary Rose, is not as bad as Judy and Steve’s grief because their first daughter, Hannah Audrey, died at 18 months of brain cancer. Judy and Steve’s pain is not as deep as Miko’s grief. Her son, Josh, was in his early twenties when he died suddenly in a car accident. Miscarried children aren’t weighed on this scale most of the time. When I ask my mother how she came up with her statements she says that when you have more memories you miss the child more. According to this scale the longer a child lives, the deeper the grief.

I disagree. I think of my daughter’s life and I try to extrapolate a new memory, a part of her, something from our journey. I had contractions for the duration of her life. She was buried in her baptismal gown that had pink roses on it. No baptism. No milestones. No smiles. It was one life-changing moment. Sometimes I only remember the feeling of her weight in my arms wrapped in a blanket, my thoughts “I can’t believe it’s already over,” and my son bending happily to give his beloved, still sister one more kiss. When I hear parents speak of their children who have reposed, they smile, often with tears in their eyes, remembering outings, moments, words, hugs, dreams and kisses. My heart longs to know something of my daughter’s personality and quirks. I feel her presence with me all the time, but my body and heart want more.

A couple of weeks ago Terry emailed a few friends about a negative Facebook experience. A friend told her that Terry should get over her daughters’ deaths because Terry’s grief was not “one-tenth” of hers. This woman who was sexually abused by her father and brother, and later stayed with an abusive husband, took to cyber-bullying a friend whose entire family had died. Another friend who is a priest told Terry that losing a parish entailed more grief than losing a child. When Terry asked “Why?” the response was “Because God is in the parish.” Terry asks me “Isn’t God in a mother who bears her child?”

People tell me often that I shouldn’t cry because I have a living son. I am reminded again and again that some people’s first pregnancies end in death. Though I know that my son is a blessing, grief doesn’t work that way. I carried and buried a child. I have a right to stay in the space of grief, to work through it, to feel the pain of not having my daughter here in the flesh for the rest of my life. She surrounds me. She is in my heart. I love her, but it still hurts. I don’t know that this would hurt less if I had a half dozen children.

Even here discussing Mary Rose, and Terry’s beautiful daughters, Heather and Holly, let’s not compare. Mother Gavrilia, the Greek Orthodox nun, writes that comparison is violence. If we are all created in God’s image, than how is one of us better than another? How does one person’s grief hurt less? If we believe in soul contracts, fate, karma and God’s will, then the tragedies of our lives shape us and prepare us for furthering our work on the planet. I believe that I was chosen to be Mary Rose’s mother, that she chose me, that we chose each other. Terry’s path is different from mine, and so is her journey of grief.

I choose not to compare life to death. I want to think about life and Life. Not this side on Earth or that side of the veils, but of life and the deeper Life beyond this body in the multi-dimensionality and beauty of our Creator who sees the entire Universe in those loving eyes. I know that Mary Rose, Holly and Heather Live. They are now our ancestors, each child a beautiful and divine creation in her own right. How can we compare a newborn, a twelve-year old and a twenty-two year old daughter or how much their mothers miss them?

Terry made mosaics from the broken pieces of Christmas ornaments and dishes and glass after her children died. Some pieces broke on their own but she shattered others, arranging them to make beautiful art. The picture above, which is on the cover of Terry’s book, has several words. I see the words glad, tidings, heralds, Child’s, Earth, world, Joy, Peace. John Milton’s words But what is strength without a double share of wisdom appear unbroken, and the angel, whose left hand and wings are missing looks out at us, her chin held high.

Stop This Milk Please!

Earth-Mama-Angel-Baby-Organic-No-More-Milk-Tea-859220010180

The night after I buried my newborn daughter, my milk came in. I had hoped that I would be spared dealing with mother’s milk. I was shocked and surprised that I was shocked, relieved that I did not have a severely ill child to take care of and that the pregnancy was over. Grief thick as molasses settled in with the aching physical soreness after labor, hormones that woke me up at night looking for the baby to feed, the longing to hold my child, the memory of holding a cooling baby in the bewilderment after labor. Hadn’t I been through enough? Why milk, when Mary Rose was not here to drink it? It felt as if God were mocking me. My midwife, Anni, said that the whole body was weeping. I cried and cried, struggling to get around since my sciatic pain was still severe, wondering if I would survive being postpartum at all.

It was Sunday night and my mother tried to bind my breasts while my husband slept and I cried from pain. The next morning the pain was excruciating. I wept and called my midwife who would come to help. My breasts looked like missiles about to launch. The pain was so intense that every movement hurt. Afterbirth pains continued. I remember sitting down a lot and weeping. After all that work, the months of pregnancy and labor, what did I have to show for my efforts?

When Anni came with essential oil of peppermint and a carrier oil, No More Milk tea and a bag from Rite Aide with advil, ice packs and bandages, I felt her love in her blue eyes and ready hands telling me that I would be okay. I was writing a dark poem, moping in bed, frustrated that my back pain hadn’t gone away immediately. She showed me how to massage the essential oil of peppermint in a carrier oil onto my breasts. I started to also massage out some of the milk for some relief. She often talked about the gift “these babies” are to those who encounter them unafraid, but I just wanted my milk to go away.

It took a few weeks for my milk to dry up completely. It took some time to piece together a “how to” list to stop the milk. This is what worked for me:

1. Sudafed has been shown to dry up milk. I took a lot of Sudafed for about a week and then started taking less for a second week.
2. Sage tea and No More Milk tea, both found in a health store or online at vitacost.com or luckyvitamins.com. I alternated the teas and drank them all day. I think that the sage tea worked better, but they both helped.
3. Cabbage leaves cold from the refrigerator did not seem to work. I read one study that said cabbage leaves had not been shown to decrease milk supply but acted as an ice pack and relieved some pain and pressure. I continued to look online until I found another source that said that to activate the enzymes in the cabbage leaves you had to crush the veins by going over each leaf with a rolling pin. I covered my breasts in crushed cabbage leaves and then placed ice packs on them. When the leaves wilted I did it again.
4. Essential oil of peppermint diluted in a carrier oil applied directly to breasts has been shown to slow milk supply. I did this two to three times a day.
5. Hot baths to let the milk drip out. I sat in a bath and let my milk drip into the tub each night, sometimes massaging some milk out. It offered some relief.

I started doing all of the things above, including using ice packs on my breasts, for at least two weeks and then started taking steps out. I stopped the Sudafed first, then the cabbage leaves, then the essential peppermint oil. I stuck with the teas for several weeks until my breasts no longer filled up with milk. I know that binding breasts has worked for women for centuries, but it was too painful and I decided to skip that suggestion.

After my first pregnancy I pumped milk for ten months for my son until I became so ill that I had an autoimmune disorder. I did not get sick from pumping. It was a combination of not sleeping with a baby waking up every three or four hours, coxsackie virus, and the exhaustion of pumping day and night while taking care of a baby and a terminally ill aunt that put me over the edge.

Many mothers who carry children with fatal illnesses to term pump and donate their milk to a breast milk bank helping others who have too little milk or no milk at all. After my experience with my son, I could not get back on the pump unless I had a child able to drink my milk. I felt selfish, but I did not want another baby getting Mary Rose’s milk. Perhaps this path of stopping my milk would have been easier if I had pumped and slowly weaned myself from pumping until the milk lessened, but I couldn’t do it.

In speaking to my bereavement doula, Leslie, she said that in her experience mothers who are in shock and don’t expect their babies to die often pump as a part of their process to work through their shock. She thought that I had been mourning Mary Rose during those five long months after her “diagnosis” and I didn’t need to pump.

One week after my daughter’s funeral I went to a pow wow with my doula, Leslie, and artist friend, Sindy. We sat on the grass under a tree listening to drumming, feeling that ever constant heartbeat of the Earth moving forward, even when we want life to stop. The dancers came out in their colorful native clothes, moving and singing, celebrating their culture and way of life. A woman carrying a tiny newborn walked in front of us and sat down right in front of me. It was a big park. Really? I thought. My breasts ached, my body bled and I sat there trying not to cry, held up by the sisterhood of my sweet companions. I didn’t stay long because I was exhausted, but I walked around limping and bought a wooden frog for my son knowing that the choice I would make was to continue on my path for as long as God kept me here.

It is my hope that each woman faced with milk after a miscarriage or infant death does what feels best. That first intuitive feeling in the heart center is right. Pump if that feels right and bless others with your mother’s milk. And if, like me, you just can’t do it, you just can’t attach your breasts to a machine and package up your child’s precious nourishment, don’t. Either way, you will survive this time that feels endless and maddening. Those post-partum months were worse than I expected, especially because I couldn’t sleep through the night. I would wake up after a couple of hours of sleep and toss and turn for hours. Where is my baby? I kept thinking. My eyes would dart around looking for the girl I wanted to hold and nourish.

Where is my baby? I like to think that she is right next me, cheering me on. You can do it, she says to me. And so can you.

I hope that you are accompanied by a few holy sisters who surround you and hold you in your tears as the Earth beats on.